What Do You Guys Think/know About The VNS…. My Neurologist Brought It Up Once And I Think I Might Need It. | MyEpilepsyTeam

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What Do You Guys Think/know About The VNS…. My Neurologist Brought It Up Once And I Think I Might Need It.
A MyEpilepsyTeam Member asked a question 💭

VNS (vagus nerve stimulator) it’s an implant
I have been on five seizure meds in the last four years and they are not working as well as I need them to.

posted April 18
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A MyEpilepsyTeam Member

My son got his in December 2023 and I’m still not sure it’s working

posted April 19
A MyEpilepsyTeam Member

I've had mine for almost 10 years now and it's been one of the best things I did!
I'm still on medication. I do get a bit of a cough if it goes "off" and I'm looking to the left. Most of the time I can't sing when it's on.
So yes... there were some changes to get used to.
The recovery time for my seizures went from hours to mins (or nothing at all)! Sometimes it stops my seizures all together! I'll feel the different types of seizures starting and then "poof" it's gone! Then I go back to what I was doing.
The VNS is one of the best things I did for sure!!!
Now... I'd literally tried every other form of medication and had surgery before doing this.
Any invasive surgery is a big decision. I hope this helps.
Good luck on your journey.

posted April 19
A MyEpilepsyTeam Member

It works well for many of us . Then there are people like myself , the VNS doesn’t work well with. It wasn’t until the DBS approval in 2018 by the FDA . In 2022 I got the DBS put in. It has work in decreasing my seizures. The VNS didn’t reduce any of my seizures.

posted April 18
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I had a VNS for 3 or 4 years. We never saw any improvements with my seizures, plus I hated how it vibrated and made me cough and messed up my speech. I did have it taken back out of me. But it could work better for you.

posted April 18
A MyEpilepsyTeam Member

It is different for everyone but it will not make you seizure free and still need meds. I have had my vns for a little over 2 years now with no luck so I am going to get it turned off or taken out at some point.

posted April 18
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